Tuesday, February 17, 2009

NVA Cost of Illness Survey

The NVA is seeking women with vulvodynia who live in the United States to participate in a cost of illness survey, which asks questions about lost work hours and out-of-pocket expenses related to having vulvodynia. From a cost of illness survey, analysts can calculate to what extent a particular health condition impacts our economy. It is important for NVA to have this information to convince members of Congress and NIH staff of the great need to increase funding of vulvodynia research.

Participation requires only 3 hours of your time over the next 6 months. With the use of a NVA-supplied calendar, you will keep track of your vulvodynia-related expenses, such as prescription medications, doctor visits and over-the-counter remedies. Participants will anonymously log onto NVA's web site once every four weeks (for six months) to record expenses. Each time you log on, the survey will take 5-10 minutes to complete.

I've been participating in this survey for a few months. I think it's a good idea, and probably necessary for funders to take vulvodynia research seriously, but I think it has blind spots -- I was toldnotto record the difference in food costs for eating gluten-free even though that's the one thing that has made a major difference in my vulvodynia. The response was "only over-the-counter treatments" -- well what's more over-the-counter than food?! And what's better medicine than good food? I mean, seriously. And since I'm not taking any prescription meds and I'm not seeing doctors, the only costs I've recorded have been supplements.

So, yeah, probably good if you participate, but a little blinded, as all medicine seems to be, to the necessity of a good diet.

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I have chronic pelvic pain. Feel free to contact me with any comments or questions at madpeachblog AT gmail dotcom. If you're on Facebook, you can find several support groups there for vulvodynia and pudendal neuralgia. I've drawn a lot of support from those groups. Best wishes to everyone out there dealing with this pain. I hope there's a bright future ahead for all of us.

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